I’ve been mulling over what to write for an update. I don’t have much of one, but here are the little things I have to say.
- I’ve just done my first 4-week infusion of Orencia. Previously, infusions were biweekly. It still wipes me out when I get home. I have yet to figure out if it is my nerves (I’ve often had to crash for hours after very stressful situations), the Orencia itself, or the 1/4 mg of Xanax I take right before. While Xanax does help me sleep at night, I haven’t figured out why 3 hours after taking it I’d be so exhausted I crash for a multi-hour nap. Even though I know the infusion is no big deal, that doesn’t stop my lower digestive tract from spasming, which causes urgent and frantic rush to the bathroom. This pretty much happens every morning of an healthcare appointment of any kind–from general appointments, to labs, to testing, to infusions, to other injections. I call it my nervous stomach, even though the activity is mostly below it. Still, I suspect it is too soon to tell if Orencia is working. I’m having more symptoms than I was before starting it and discontinuing my magic potion.
- I still can’t take the heat, so I stay out of the kitchen, or more appropriately the oven (a.k.a. Texas). I ran out of one of my meds the day I left for Texas. This med, Xyzal (a concentrated form of Zyrtec) keeps me from itching and scratching. When I don’t take it, I scratch like crazy all over, even when there aren’t any visible lesions. It’s quite maddening. It’s tolerable with Benadryl…unless I’m in Texas. The heat is so excessive, and the humidity is beyond words. So, I had many nights in Texas with limited sleep because I didn’t have this med and didn’t bother refilling it there. Why? I guess I got lazy…and stupid. The good news is that now that I’m back at my temporary, out-of-Texas home, I’ve been relieved of my insane itching. Is it the lack of heat or the Orencia that’s doing the trick?
- My goal of filling my summer with family was achieved and a success! In the end I will have had a total of 3 days without anyone home with me. My Superman has been away for 3 months for work. Because I don’t have family nearby, I forced them to visit me then drove to Texas to torture them with my presence. Fortunately, for most, it was not torturous. Fortunately, for me, they were kind enough to put me up for a night or more. While I did miss Superman, I was properly distracted and never felt lonely. I don’t think Superman can say the same. He’s been stuck in a hotel room for 3 months. I did 5 days in a row in various hotel rooms and was quite tired of it. I cannot imagine 3 months of it.
Following this odd update, I will hold off on updates till I have actual news, especially regarding Orencia.